Senior Member

Just reading this again and reading the comments makes me feel heavy and sad. We need a patient organization that goes to bat for us every day, not just when it suits them. We need them to say NO to the psychiatrists from the UK like Peter White and Simon Wessely instead of publishing them and their unscientific, flawed studies in their Continuing Medical Education pamphlets and on their website. The CAA has sold us down the river.

Senior Member

I was going to apologise for reposting this and then thought why!
Is the blog a big fat lie or is there truth to it .
ActUp was successful because they were dying and angry and thousands of them were one voice.If you think CFS/ME can't be a killer you're very wrong.I've had 2 cancers and I'm 54..a coincidence.Not according to an immunologist.
Why wouldn't CAA jump on the band wagon when the XMRV was discovered and use it for lobbying...some say they don't know if it's THE virus well they don't know if it ISN'T
I need an organization who isn't cosy with the boss.I see wasteful spending with funding and I don't need loving caring words because I don't believe you.
Hell teejkay don't be sad that only makes you more tired.Anger is a much better emotion
it'll move you forward.CAA could use a lot of it.
Since CAA is lousy at lobbying I know where my donations are going.

Senior Member

I was going to apologise for reposting this and then thought why!
Is the blog a big fat lie or is there truth to it .
ActUp was successful because they were dying and angry and thousands of them were one voice.If you think CFS/ME can't be a killer you're very wrong.I've had 2 cancers and I'm 54..a coincidence.Not according to an immunologist.
Why wouldn't CAA jump on the band wagon when the XMRV was discovered and use it for lobbying...some say they don't know if it's THE virus well they don't know if it ISN'T.Has the CAA offered some much needed funding to WPI?
I need an organization who isn't cosy with the boss.I see wasteful spending with funding and I don't need caring words because that doesn't do a damn thing for me.
Hell teejkay don't be sad that only makes you more tired.Anger is a much better emotion
it'll move you forward.CAA could use a lot of it.
Since CAA is lousy at lobbying I know where my donations are going.

Phoenix Rising Founder

I think its sad that Hilary is so drenched in anger that she can't see straight.

This stuff is unfair and its sloppy. There are no facts presented - its a simply a complete dump. I know Hillary Johnson is loved because of Osler's Web but this is not Osler's Web. Its a HUGE step down from Osler's Web.

I don't know why so many people take her tack on things in such a verbotten manner. Scratch the surface below the powerful words and you're not left with much. I realize alot of people won't like what I wrote but show me where I was wrong (?). And then tell me why you trust her.

A Dark Vision

Hilary Johnson, beloved CDC headhunter is raking the CFIDS Association over the coals again. Once again she’s taking no prisoners. In her last blog on the CAA she called the organization the Bechtel of the CFS community and accused them of inciting a ‘pogrom’. In this blog she proclaims CAA is the CDC and vice versa .

Osler’s Web was a tour de force of journalistic acumen - a remarkable achievement for anyone let alone someone with this disease. Yes, it left no room for honest but wrong researchers coming to grips (badly) with a mysterious problem; but even if Hilary put her own spin on them the facts were there.

But are they now? Hilary Johnson spun a dark web in Osler’s Web but she’s spinning a much darker one now. An author can only do so much to damage a taxpayer financed independent federal agency but an author can certainly affect a patient supported organization’s ability to function. The CAA’s credibility is the coin of its realm, ruin that and you ruin the organization - and everything it has the potential to accomplish.

So when one swings ones axe at the CAA one should take care that one is lopping off the right limbs. But is Hilary ‘taking care’ or is she just swinging? Do her blogs on the CAA illuminate or obscure? Should the the patient community sign onto her dark vision? This look at Hilary’s latest diatribe suggests not.

“Did it become all about them, and not about you, when the CFIDS Association sought to position itself as a kind of mini-research institute, a provider of grants to scientists, with former CDC scientist Suzanne Vernon the arbiter of what was and was not worthy science?”

The Suzanne Vernon: CDC Connection - Hilary apparently believes that having Dr. Suzanne Vernon help determine which projects the CFIDS Association funds means the organization is not about ‘you’ (the patient) but is about them (the organization). Let’s be very clear about this - the problem with Suzanne Vernon for Hilary is that she formerly worked at the CDC ( ie in aformer CDC scientist Suzanne Vernon) . How else to understand her and other bloggers who refuse to allude to Dr. Vernon without putting her in the context of the CDC? How else could creating a ‘mini-research institute” mean the CAA is no longer about patients” Its all about Dr. Vernon and her former connection to the CDC. In Hilary’s World its not what you do but who you knew.

What has Suzanne Vernon done since she left the CDC? The CAA’s research program is now funding cutting edge research focusing on mitochondrial brain problems, the gastrointestinal system, aberrant muscle receptors, nitric oxide and the vascular system and more. None of these projects bear any resemblance to the CDC’s research program.

The CAA’s decision to employ outside researchers to review the grants first actually insulated the CAA from an important part of the review process. Add to this Dr. Vernon’s project to create a collaborative engine for ME/CFS research (the International Research Network) and you understand why she was the only person, aside from Annette Whittemore, to receive a standing ovation at the IACFS/ME conference in Reno. If Hilary Johnson doesn’t appreciate Dr. Vernon’s efforts the ME/CFS research community does.

“She (Kim McClear) has failed to use her access, her voice, in any way that might have been helpful; instead, she has identified with government officials and their problems instead of your problems; she’s made it easy for them to keep you quiet and (and sick), all the while assuring you in that unctuous, phony PR patter that she’s on top of things.”

Kim McCleary - This statement, most of athisll stands out “She (Kim McCleary) has failed to use her access, her voice, in any way that might have been helpful”.

What an amazing statement! In her 2 decades of work Kim McCleary has failed to be ‘in any way…(to be) helpful” to ME/CFS patients. This is a dark vision indeed. In fact, Kim McCleary has a substantial record of achievement at the federal level and elsewhere.

Creation of the Federal Advisory Committee on CFS (CFSAC) and then fought off attempts to disband it

Pressured CDC to create the first ever Media Campaign on any disease. This resulted in a multi-year campaign that reached millions of Americans with the message that CFS is real and serious disorder

Pressured the CDC to create the Provider Education program including the physician toolkit, exhibits at numerous scientific conferences and the Train the Trainer program involving Dr. Lapp, Dr. Freidman, Dr. Jason and others.

Pressured the Social Security Administration to create specific rules on CFS. CFS is now one of the few diseases to have a specific ruling on it.

Used Senator and Congressman to dig up documents on the CDC over the past two years. Created the most substantive and rigorous examination of the CDC’s CFS research program on any organization. Called for new leadership at the CDC and the program to be moved to a new division. Slammed the programs poor productivity and its focus on sexual abuse, cognitive behavioral therapy and the empirical definition.

This doesn’t include the Physician Education program, the Research Initiative, the recent Banbury Conference, the budding International Research Network with its emphasis on sharing ideas, data and samples and speeding up the pace of research.

CAA IS CDC/ CDC IS CAA - Not only has Kim McCleary done ‘nothing’ to help patients she runs an organization that runs hand in hand with the CDC.

This statement is almost breathtaking in its audacity. It assumes that CFS patients are either ignorant of the CDC trials over the past year or don’t care. Below are just some of the resources that document on the CAA’s ‘assault’ on the CDC over the past year and a half or so.

“Vernon and the CFIDS Association fell all over themselves in an effort to caution that XMRV will probably apply only to a “sub-set;” it may be a “passenger;” the patients weren’t well characterized; there must be co-factors, in other words, it’s multi-factorial. “

While lauding the discovery the CAA also cautioned, as did virtually every other professional organization, that the original study was limited to a specific subset of patients and most of all that it was a first study. As you can see below they were in some pretty good company.

ME Association

“Further and much larger studies must be carried out using people with well defined ME/CFS in different countries. This work should include people at different stages of the illness…and in all degrees of severity. Different international laboratories, with solid experience in dealing with retroviral research, need to test for evidence of XMRV. The bottom line to this interesting research is that it currently raises more questions than answers”

“Chief among these concerns cause and effect: the researchers’ work has shown a suggestive, significant association between the presence of XMRV and a diagnosis of ME/CFS, but this is far from proof that the virus has a direct or even indirect role in the development or maintenance of the illness. XMRV might prove to be simply a passenger virus carried by an immune-depressed ME/CFS patient population, with little or no influence on the illness.”

“First is, of course, to establish what the real role of the virus is in this disease…whether the virus is the cause of the disease or a passenger, or just a geographic coincidence of infection with the disease, all of this remains to be established.”

Hilary wants XMRV to be what it isn’t yet - the answer. Until studies replicate the WPI’S findings and extend the results to the rest of the ME/CFS community we won’t know how far XMRV reaches. Polls on the Phoenix Rising website are just getting going but in the very early results more people are testing negative than positive to XMRV.

The CAA’s ‘Hate’ of Infectious Diseases

“Besides, XMRV is an infectious, cancer-causing retrovirus, and we know how they hate infectious diseases.”

CFIDS Association Grants for Pathogen Research. The CAA has been funding research for over 20 years. Here are some I’m aware of off the top of my head. It doesn’t appear that they hate infectious illnesses at all…

Elaine DeFreitas - retrovirus

Dr. John Martin - Mystery virus

Dr. Grossberg - retrovirus

Epstein Bar Virus - Ronald Glaser

Endogenous Retroviruses - Brigette Huber - “Results from Huber’s pilot study have shown a strong correlation between infectious agents and CFS.” From the description of the study.

The title of the Banbury Conference the CAA produced was ‘From Infection to Neurometabolism’.

The CAA’s Unwillingness to Pressure the FDA to Develop New Drugs

“With the other hand, it (the CAA) would be demanding clinical trials and drug development at FDA, instead of warning you it might take years for therapies to be developed.”

Hilary would have the CAA demand that the FDA develop drugs for CFS! After all if they were a real patient organization they would do that - of course they would! The only problem is that FDA doesn’t develop drugs - they evaluate drugs - the drug companies make them. (Imagine the conflict of interest if the FDA developed drugs and then was in charge of determining whether to sell them or not.) I for one am glad that the CAA isn’t demanding that the FDA develop drugs for this disease.

Conclusion - Hilary’s latest blog on the CAA is full of overblown rhetoric and contains mis-statement after mis-statement. One could easily ask when it became all about Hilary’s anger.

I believe there are things to discuss regarding the CAA but Hilary’s vision is too dark for that to occur. Like the CAA or not they have produced results. Whether they should’ve produced different results or done X or Y instead of Z is something that can and should be debated. But it can’t as long as Hilary’s anger drenched vision holds sway.

How do you know that they're not lobbying? Why would you think that they're not? They used their connections to Senator Reid and a congressmen to get the goods on the CDC. Why would you think they wouldn't use them here?

What is having Suzanne Vernon on the DHHS task force for XMRV if not lobbying?

Senior Member

Senior Member

I'm new to Oslers Web,the CAA and thought I knew what the CDC did,evil doings and all.
Tell me why this woman is so angry?Why are all her statements mis-statements because what you're telling me is that everything she has written in that blog is bull.
Who wrote A Dark Vision?
I've read opposing feelings about the CAA on this board and I know that doesn't mean if you have issues with the CAA you love Ms Johnson.I also hear what you've just said to be exactly the same as Ms Johnson herself but on the other side of the coin.
I think there must be some truths from both of you..No one is always right or always wrong.
I must keep that grain of salt at all times.

Senior Member

everything Hillary Johnson writes in her Blog rings true to me. I've been through this since 88 and followed it all carefully. The CAA pulled the funding on Defrietas after she stuck her neck out for us and her career was ruined. Why would I think they woud ever stand behind retrovirus research a second time around?Aren't the same people in charge?

If what Hillary writes seems dark it's only because it echoes the truth of how our story has unfolded for 20 plus years. It's not a rosy story and the characters are not pleasant.

The reason we're so upset is because the CAA is ruining it's own credibility and Hillary is pointing out a few of the things they have done that betray us. We want the CAA to be here for us, the patients with CFS.

Hillary wrote: “Did it become all about them, and not about you, when the CFIDS Association sought to position itself as a kind of mini-research institute, a provider of grants to scientists, with former CDC scientist Suzanne Vernon the arbiter of what was and was not worthy science?”

I don't know how this rumor got started, but the fact is that the Association has not received ANY applications for research funding on XMRV. Zero. Therefore, the Association never denied such a request for funding from WPI or anyone else. No such applications were submitted.

Senior Member

I don't know how this rumor got started, but the fact is that the Association has not received ANY applications for research funding on XMRV. Zero. Therefore, the Association never denied such a request for funding from WPI or anyone else. No such applications were submitted.

Khalyal

Guest

I don't know how this rumor got started, but the fact is that the Association has not received ANY applications for research funding on XMRV. Zero. Therefore, the Association never denied such a request for funding from WPI or anyone else. No such applications were submitted.

Did the CAA turn down any funding requests from the WPI? I'm uncomfortable with the fact that every time this issue gets brought up, there is denial that 'no XMRV funding requests were turned down". However, at the time of request, it most likely would not have been referred to as an "XMRV" study...since that's what they were kinda keeping secret?

Not correct Alice! If you remember from the blog the CAA, like almost all organizations that fund medical research, has a review process that grants must go through to get funded.

Once they have their funds they announce a date when grants can be submitted then they score all the grants - using outside reviewers - and award the ones they think are the most valuable. Thats the way the grant process works just about everywhere from what I can tell.

Phoenix Rising Founder

everything Hillary Johnson writes in her Blog rings true to me. I've been through this since 88 and followed it all carefully. The CAA pulled the funding on Defrietas after she stuck her neck out for us and her career was ruined. Why would I think they woud ever stand behind retrovirus research a second time around?Aren't the same people in charge?

Almost 20 years ago the CAA was the sole source of funding for Dr. Defreitas for several years - giving her 20,000 a month. It was after a Scottish team, Dr. Jay Levy, the CDC team, the Gallo team, Dr. Herst and the Chiron labs failed to replicate her findings that they pulled the plug on Dr. DeFreitas. Its all in Osler's Web - thats where I got that information from.

Somehow the CAA got to be one of the fall guys for Dr. DeFreitas. The problem was that multiple labs failed to replicate her findings, not just the CDC. Check it out.

The CAA at that point was also funding Dr. John Martin and Dr. Grossberg - both of whom were looking for retroviruses. They went on to fund numerous studies on pathogens - yet here Hilary is stating the CAA hates infectious pathogens. Somehow that fact doesn't seem to be striking a chord in anyone.

Phoenix Rising Founder

This is a very different blog than the one I remember! She's changed it markedly - filled it out considerably and toned down her language markedly.

There are things I agree with. I think she's got a point about the passive - aggressive stance. I think the CAA should be more provocative - I've said that many times. But even though the CAA has taken a mainstream approach - there's no doubt about that - they have many accomplishments and that's one thing I take Hilary to task for - ignoring the accomplishments.

She's really toned down her language in this latest version of the blog - something shes done several time with her blogs about the CAA.

This was crazy. Hilary really trashed the CAA at the end of her book - unfairly I believe. If you read Osler's Web - at least after I read it - I came to the conclusion that her work really was refuted and not just by the CDC. Hilary obviously thought otherwise.

Apparently--perhaps because the book was not all about them--their impulse was to manufacture an ad hominem assault in tandem with the rest of their frantic activities described above. It's demonstrative of one of the organization's major failings: They have no real concept of a free press, or of what journalists actually do; they apparently fail to distinguish between journalism and public relations.

Yes, there was evidence of financial problems at the CDC but when you have an actual whistleblower with documents - turning him away is a tough call indeed. But thats not how Hillary sees things - there are no tough calls; there's the right way and the wrong way.

Hilary seems to think that the answer was just lying there open to everyone but it never has been; the answer has never been obvious in CFS - there are problems with every area of research. She ignores the fact that the CDC did do good work a couple of years ago - very good work that really helped raise CFS's legitimacy. She also ignores the fact that when the CDC started to turn in the last two years the CAA went after them as strongly as they could. No they weren't shouting in the street; instead they were creating rigorous analyses of the CDC's plans and documenting unbelievable financial mismanagement - yet Hillary still says CAA is CDC.

as ten million people had this "illness," and most of them had yet to be diagnosed, they added. Remember: “Get Informed, Get Diagnosed, Get Help”? The headlines went viral. Twenty-one years after Tahoe, and after hundreds of millions of dollars wasted by CDC on Abt Associates and the CFIDS Association, and the message was the same: chronic fatigue syndrome was not a medical disease, it was a lot of stressed-out, traumatized people

this is Hillarys slant but this was never so. Because the autonomic nervous system and HPA axis is screwed up in CFS (ie the stress response) doesn't mean CFS was not a medical disease; it meant it was a medical disease. Its always been such an easy almost shameless slant to tag 'stress response' research with stressed out people. Its a shame really.